AMERICAN ASSOCIATION OF KIDNEY PATIENTS INC
14440 Bruce B Downs Blvd, Tampa, FL 33613 www.aakp.org

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Organizations Filed Purposes: AAKP is dedicated to improving the lives and long-term outcome of kidney patients through education, advocacy, patient engagement and the fostering of patient communities. AAKP is the oldest and largest, fully independent kidney patient organization in the U.S. AAKP fights for early disease detection; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation; and the elimination of barriers for patient access to available treatment options.

Fabry: While a variety of factors may cause an individual to be diagnosed with kidney disease, genetic causes are especially difficult, due to the fact that an individual may not be aware they have a gene mutation predisposing them to a disease, they may not understand how early detection can help identify interventions and treatment options and they may not understand if or how other family members may be at risk for the same diagnosis. Recognizing the need to support individuals who have kidney disease caused by a genetic condition, AAKP developed, under its Center for Patient Research and Education, the Fabry Disease Testing and Education Program. Since 2007, AAKP has provided free genetic tests to more than 3,000 individuals. Over the years the program has expanded from familial testing to diagnostic testing, targeting individuals with no known family history of Fabry Disease, but presenting signs, symptoms, and markers for the condition. This has increased the population this testing and education program reaches, successfully helping those get diagnosed earlier in the disease state so interventions can take place to help reduce or stop the disease effects. Data collected from this program is also helping researchers identify markers for earlier diagnosis and improving treatment options.

Center for Patient Engagement and Advocacy: The AAKP has been a national leader in patient advocacy and education for over 50 years - and is the largest fully independent and patient-governed organization in the kidney ecosystem. AAKP is highly regarded across the Federal government among both career and appointed policy-makers and our influence in the Executive Branch and the U.S. Congress transfers across transitions and elections cycles due to our massive network of relationships and long-held reputation as an independent voice for patients. AAKP believes that patients and industry must be at the table together and engaged at all levels of decision-making whenever the Federal government seeks to implement wide-ranging initiatives that impact innovation and shape future access to care options for individuals affected by kidney diseases. AAKP fundamentally understands that kidney disease and the health and treatment of kidney patients pose a significant impact on the American taxpayer and the national economy. The cost of kidney disease alone invites constant and intense interest and concern within the Federal government and the U.S. Congress. The costs associated with the disease have spurred multiple Federal initiatives in the past several years designed to increase positive patient outcomes, reduce spending and increase efficiencies. The move by the Federal government to examine and re-examine many of the cost-drivers within healthcare spending, and specifically within the ESRD program, represents a key reason why AAKP is working aggressively to build our capacities to raise the independent patient voice throughout the Federal policy-making process. In order for AAKP to maintain our leadership in protecting patient interests, and the overlapping interests among allies throughout the broader kidney community including the pharmaceutical industry and providers, we intend to grow our membership numbers, advance our National AAKP Ambassador Initiative, expand our reach internationally and equip kidney patients across the globe with proven and cost-effective training and technologies that make an impact on the policy process. The Center for Patient Engagement and Advocacy was created to leverage AAKP's increased profile and influence in the national public policy process and to expedite implementation of our national strategy to vastly expand patient involvement in the decisions impacting their health outcomes. The AAKP Center for Patient Engagement and Advocacy was created in 2014 to leverage AAKP's increased profile and influence in the national public policy process and to expedite implementation of our National Strategy to vastly expand patient involvement in the decisions that impact their health outcomes. The Center for Patient Engagement and Advocacy brings, under one focused area, all AAKP efforts to build patient and family/caregiver membership in AAKP as well as their participation in existing and emerging AAKP patient health engagement and advocacy programs. At the heart of this Center is the AAKP Ambassador Initiative, launched in 2017, the program has grown to more than 160 + Ambassadors in nearly all 50 states plus D.C. In 2019, AAKP launched the Global arm of this initiative and now has Global Ambassadors in countries such as Ireland, Canada, Argentina, United Arab Emirates and Puerto Rico. Ambassadors are AAKP's most engaged volunteers who utilize their personal experiences and professional skills to contribute to both the AAKP mission and the larger kidney community based on their desire to serve a cause larger than themselves. These individuals also allow AAKP to expand our reach and resources to make a positive impact at the state and local level and globally. Since 2018, AAKP has conducted the largest virtual kidney voter registration drive in America, the "I am a Kidney Voter" campaign, which has registered patients in every state. #IAmAKidneyVoter, #KidneyVoter. Major programs within this Center include the Decade of the Kidney, the Global Summit on Kidney Innovation, the Public Policy Summit, and the Ambassador Initiative. Additionally, as part of the AAKP National Strategy, the Center for Patient Engagement and Advocacy works to engage, train, certify and deploy kidney patients in ways that are the most effective at elevating the patient voice within Federal policy-making circles. This includes critical times when national legislation, health program implementation, regulations or potential delays in the pharmaceutical approval process pose a concern to patient access to quality care or their future healthcare outcomes. AAKP is engaging and encouraging kidney patients and caregivers to participate in substantive opportunities for effective patient engagement and advocacy. AAKP operates via key distinctives and principles: 1. Elevate patient voice in national issues and across drug, diagnostic and device development2. Protect the unique relationship between patients and their doctors3. Educate patients and preserve their access to choices as informed consumers of healthcare4. Maintain full independence in all national policy and decisions - never surrender your letterhead5. Honor the principle of "no surprises" among trusted allies and Federal government officials AAKP has a history of advocating on important issues affecting patients' care, treatment, options, medications and such. The Advocacy Program helps support initiatives such as: Capitol Hill Day visits, participation in meetings/seminars/conventions, public policy, Communication, research issues affecting patients and practical tools that explain how to be more effective advocates.

Patient Information and Education: AAKP is dedicated to improving the lives and long-term outcome of kidney patients through education, advocacy, patient engagement and the fostering of patient communities. AAKP fights for early disease detection and appropriate diagnosis of rare/genetic conditions; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation including artificial wearable and implantable kidneys; and the elimination of barriers for patient access to available treatment options. At AAKP, we1. Educate: patients & caregivers on important issues so patients can better understand their condition and make informed decisions on their care options which align with their life's goals and aspirations. AAKP is a recognized leader for patient-centered education - continually developing high quality, professionally written, edited and reviewed material.2. Advocate: for policies that improve treatment and extend life for kidney disease patients - always defending patient choice. AAKP has been the independent patient voice - advocating for improved access to high-quality healthcare through regulatory and legislative reform at the Federal level. The Association's work has improved long-term outcomes in both quality of health and the ability for patients and family members affected by kidney diseases to lead a more productive and meaningful life.3. Define: "patient engagement" as a substantive tool to impact policy & health outcomes.4. Community: AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients' everyday lives.The AAKP fulfills our educational mission through an extensive patient education program to inform and educate kidney patients, their families, and the general public on kidney diseases. To meet the needs of all individuals, AAKP offers its programs in a variety of mediums: print, web-based and live (in-person). AAKP services more than one million individuals annually via its various educational programs and communication platforms.AAKP's bimonthly magazine, aakpRENALIFE, averages more than 400,000 readers/views annually and includes information about the latest news, education, policy/legislative issues, innovations/research occurring in the kidney community and patient/caregiver/living donor profiles. The magazine is also distributed to over 7,000 dialysis centers nationwide and has a substantial afterlife as it remains in dialysis centers for quite some time after mailing. aakpRENALIFE is available via print/digital medium and is archived on www.aakp.org for a term of one year.AAKP's monthly e-newsletters, collectively, were delivered more than 250,000 times during this year - including aakpRENALFLASH (designed for individuals on dialysis); Kidney Transplant Today (designed for individuals with or interested in a kidney transplant); Kidney Beginnings (designed for and new patients learning more about their disease; At Home with AAKP (designed for individuals on or interested in home dialysis therapies) and AAKP Pediatric Kidney Patients (designed for peds, adolescents and their families). AAKP hosts its monthly HealthLine webinar series for patients and the public on timely and relevant topics such as managing risk factors for kidney disease (diabetes/hypertension); understanding dialysis options; kidney transplantation; how to choose/change treatment options; diet/nutrition; importance of exercise; coping with a chronic illness, advocacy and social media; and more. These webinars are recorded and made available OnDemand to accommodate all schedules and needs and reach thousands annually. AAKP utilizes a variety of communication platforms to reach approximately one million individuals annually. Included in that reach is AAKP's social medial platforms: Facebook, Twitter, LinkedIn, Instagram, Pinterest, and YouTube Channel. AAKP's website (www.aakp.org) has over 420,000-page views annually. The website features the AAKP Center for Patient Research and Education and Center for Patient Engagement and Advocacy - including:" education (CKD, dialysis, transplant, co-related health conditions; causes of kidney disease; rare disease; nutrition); clinical trials/market research opportunities; Action Center (advocacy initiatives; policy issues; voter registration); patient engagement (Ambassador Initiative; Speakers Bureau; Veterans Health initiative; KidneyWorks; Support Groups), programs/events (National Patient Meeting; Cystinosis Scholarship Program, Medal of Excellence; Policy Summit; Global Summit; Patient Safety Program), and online store to download/purchase materials.

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